7 Things NEVER to Say to People With Disabilities

Chances are you work with someone who has a disability. Think you'd never say something offensive to them? Check this list to find out what people with disabilities don't want to hear.

We’ve all heard them. Culturally insensitive terms such as “handicapped,” “retarded” and “slow” used to refer to people with disabilities, or “compliments” such as “but you look so good,” directed at people whose disabilities aren’t obvious. While those using the terms may not mean to be insensitive, that doesn’t make the words less hurtful.

“These terms are unacceptable because they are linked to a history that the general public isn’t aware of,” says Nancy Starnes, vice president and chief of staff for the National Organization on Disability (NOD). “And just like there are terms that you don’t use for African Americans anymore, the same goes for people with disabilities.” There are approximately 11.8 million people with reported disabilities in the work force, according to the U.S. Census Bureau.

“As the demographics in this country shift, there are going to be more and more people with disabilities in the work force. And as long as accommodations are available, there’s no reason they should not expect to continue to work,” says Stern.

7 Things NEVER to Say to People With Disabilities

Read these seven things you should not say to people with disabilities, then read our list of Things ‘to’ Say to People With Disabilities to further improve awareness for diversity and inclusion at your company.

1. “What’s wrong/what happened?” or “Were you born that way?”

People view their disabilities differently. While some people may feel comfortable discussing their conditions, these are still very personal questions. They most definitely should not be the first questions you ask when meeting someone with a disability. And what’s “wrong” should never be asked.

“In the wider community, I have had perfect strangers come up to me and instead of greeting me or saying hello, they say, ‘What’s wrong? What happened?’,” says Tim Vaughn, a  marketing director with Eastman Kodak Co. “When this happens, I try to set the example by suggesting we greet each other as people first.”

2. “Oh, if you just have faith, you can be healed.”

Suggesting that a person can be “fixed” by a religious or medical breakthrough is not only insensitive, it also discounts the diagnosis of a qualified doctor. This, for some newly diagnosed people, may make dealing with medical issues more difficult.

“Some people are problem-solvers by nature and they want to help fix what they perceive is your problem. While I appreciate where their good nature comes from, it’s not the best thing to do,” Vaughn says.

3. Speaking slowly or loudly to someone who is in a wheelchair.

A common misconception is that people with physical disabilities, such as a motor or sensory impairment, also have other disabilities, particularly mental disabilities.

“When people see someone in a wheelchair, they automatically begin making assumptions,” says Vaughn. “From my personal perspective, if individuals see someone in a wheelchair, they immediately assume that there are multiple disabilities that the person is dealing with–mental, visual, auditory–and not just the fact that there is a mobility issue.”

4. “I don’t even think of you as a person with a disability.”

People with disabilities and advocates debate whether this is a “compliment” or an insult; however, many warn that it can come across as degrading a person. “What they’re trying to say, in their own way, is that I think of you as capable and able or even powerful,” says Deb Dagit, chief diversity officer for Merck & Co. (No. 16 on The 2012 DiversityInc Top 50 Companies for Diversity list). “But it comes across just exactly like saying ‘I don’t think of you as a woman,’ or ‘as Black,’ or ‘as Asian,'” adds Dagit, who has brittle-bone disease.

5. “How do you go to the bathroom?”

Questioning how someone uses the restroom is a rude question–period. It can be especially offensive to a person with a disability because it assumes that person has trouble managing basic tasks. And while you may be curious about how a person with disabilities manages things, unless your coworker volunteers the information, it’s really none of your business.

6. “But you look so good.”

There is no doubt that in today’s corporate America that keeping a good game face is important to one’s success. While this can be difficult for some people with disabilities, no one wants to have his or her work discounted.

“Comparing the appearance or ability of a person with a disability to a person without a disability has the same underlying messages as saying to a women, ‘Your report was well done, for a girl,'” Susan Henderson, executive director of the Disability Rights Education and Defense Fund (DREDF), tells DiversityInc.

7. “Oh, you’re here, you must feel better.”

It’s wrong to assume that because someone is at work, he or she is feeling better, or not affected by his or her disability that day. For people with chronic or “invisible” illnesses, becoming accustomed to living with the disability is a necessary part of an individual’s day-to-day life.

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  • I dislike the idea that one person or one group speaks for all with disabilities. I have no problem with the word “handicap”, and I never hear anyone scream about handicap placards for cars.

    I am more aggravated by the idea that all handicaps are visible, and that a wheelchair is used as the icon. Many of us have disabilities that truly limit us — heart disease, lung disease, etc., yet get short shrift in the whole discussion.

    • Dr Ahmed Adam

      HI Noonan, though I agree with the Author of the article (since I am wheelchair bound), I also agree with the important comment that you have made. There are different types of Disabilities such as Medical Disabilities (which often cannot be seen), Physical Disabilities (that can often be seen or heard) and then Intellectual Disabilities. I have often found problems in my own country for the lack of wheelchairs for people who have Physical Disabilities, but also for making it available to people who are elderly or who may be young but have limited lung and cardiac function that makes walking in long shopping malls or airports a very tiring experience. I do hope that we can eventually get to the mindset of Governments all over the world, to try and make life a bit easier for those who are disabled in any form (even providing free shuttles from home to work or home to shopping. Since I have spinal injury, brain trauma, multiple-organ damage and gunshot injuries, I can no longer drive; then simple tasks like going out for a pizza or a mall become major issues so that i would often only get out of my house every 6-8 months (once or twice a year). Thank you for an important point.

    • I completely agree. Although I use a cane the majority of the time and a wheelchair the rest, my disability is actually Chronic Lyme Neuroborreliosis Complex. I have seizures, PTSD, anxiety, dementia, depression, horrible drug side effects, musculoskeletal issues, central and peripheral neuropathy, a boatload of other issues, and constant pain. I hate being asked how I’m doing. I just lie most of the time, or with people who know my condition, say “so so” and give a cringed face. I’d rather not be asked unless they want to get into a detailed convo about my last doctor’s appointment and what he has me on, and how bad I’m herxing from it. I do that with people who constantly follow what’s going on. My hair stylist offered to come to my house to cut my hair because I’m so anxious I have an attack most times I have to leave the house, or cancel the appointment. That was something sweet she wants to do for me because she knows I need my hair in a high and tight or I start getting a bit autistic and uncomfortable.

  • Kalyana krishnan

    2. “Oh, if you just have faith, you can be healed.”

    This point is a cultural thing for example in India, this statement would be viewed as empathiser because every Indian irrespective of religion connects all events to hand of God. Hence no hurt or offence wld be inferred. Also it is a very common statement amongst Indians.

  • I had the wonderful, wonderful opportunity (early in my HR career) to work in a public bistate agency that was well-known for its record of hiring, promoting and retaining people with both physical and other “disabilities”. In fact, I put the word “disabilities” in quotations specifically because it was during my tenure there as an HR professional that I learned that “disability” is SO, SO often relative, and not necessarily physical. Looking back now on those years, I often think more about the “disabilities” that plagued many of my able-bodied and otherwise-abled colleagues! (Laugh)

    But the organization that I worked for was indeed at the forefront in this arena, and to this day I give it and my former colleagues the highest praise where disabilities acculturation is concerned. It simply, simply “was” a “thing” in our workplace. But it was never, EVER, a “big deal”. People taught, and people learned from one another. And so on and so forth, and it basically worked out quite, quite well.

    Kudos to the authors of this insightful piece!

  • From an employer HR perspective I have to agree with the comments above. While some on here have posted you personally don’t mind the term handicap or certain phrases that can be stated, in the workplace making these comments is setting up a complaint, maybe even an external complaint to the EEOC or the state’s human rights department.
    While one comment may not be be severe or pervasive enough to get it into court, the comment can be seen as insenstive, and a lot of time has been put out by HR and perhaps yourself to investigate, review policies, and end you up in a harassment training. It’s good to be proactive sometimes and remember work is not the same as seeing someone in the grocery aisle.

    • Danielle Gauthier

      You might find this odd, but I prefer the word handicapped rather than disabled. As I often say, I may be handicapped, but I am NOT disabled. To me, my crutches are a second pair of legs which allow me to retain my independence. The biggest problem I face daily is dealing with people’s personal prejudices. They are rampant in Quebec. I can’t get over how taboo handicaps are in my province. I see no light at the end of the tunnel.

      • Yes, Danielle. I live in Quebec too and agree that for some reason, this place is more unfriendly toward handicapped people than other places in Canada or the US. I’ve been working with various community groups to promote social inclusion. Just be yourself – be powerful – don’t let negative energy get to you.Surround yourself with people who are positive and ditch the ones who are not.

      • Alexis L. Hope

        It is possible that a disability is the cause of a handicap. For example, if a person has a disability that prevents them from being able to move their legs, it may result in a handicap in driving.

        Disabled people do not have to be handicapped, especially if they can find a way around their disability. For example, braille for the visually impaired or wheel chairs for those who cannot walk.

        Introduction (from Wikipedia) Disability is the consequence of an impairment that may be physical, cognitive, mental, sensory, emotional, developmental, or some combination of these. A disability may be present from birth, or occur during a person’s lifetime.

        any physical or mental defect, congenital or acquired, preventing or restricting a person from participating in normal life or limiting their capacity to work.

      • Annie Davies

        I too prefer the word handicapped even though it is never used here in the UK. the word disabled literally means the opposite of able. If a link doesn’t work on a website you will often see ‘this link is disabled’ or you can chose to enable or disabled certain items on your pc. To disable them results in them no longer working. How is that politically correct, to describe someone as broken or not working properly. I’m a wheelchair user with a neurological condition which only began to effect me from the age of 16 and I get so fed up of people meeting me and having the first words out of their mouth be ‘what’s wrong with you?’ Or if they meet one of my friends who is also disabled the first thing they ask when they are out of earshot is ‘what’s wrong with him/her?’
        I also get the issue about presuming someone with physical disabilities also has other impairments. I have an assistance dog who goes everywhere with me and I often hear people whispering behind me saying oh that girl is deaf. Or more ridiculously she’s blind. I say ridiculous as I use an electric wheelchair as my disability affects all 4 limbs so if I was blind I don’t think it would be safe for me to drive! Plus if my dog was a guide dog she would be pretty incredible to direct me in my chair to avoid obstacles!
        On the other hand though, I hate the awkwardness people have with me where they are scared of saying the wrong thing. Or scared to offer help incase I get offended. I think it is good for people to be more aware of what or how they are saying things but I also think people shouldn’t be punished for slipping up and saying the wrong thing (unless it’s meant as an insult) otherwise you just create a world where people are too scared to approach anyone with a disability which is just sad! I find that’s what great about having my dog she is a real icebreaker and conversation start point. Plus wearing my t-shirts saying things like ‘walking is overrated’ also helps people who don’t know me to see I don’t take life too seriously and actually am approachable. Although maybe not suitable for the workplace!!

        • Nicole Yellig


          Dear Annie Davies,

          hi. My name is Nicole Yellig. I’m 41, and I have grand mal seizures. I don’t like to be called stupid, knucklehead, moron, mentally ill, mentally insane, incompetent, child, idiot, not with this reality, and more. I’d prefer to be normal. I don’t want to be disabled. I want to do things on a daytime base like normal people do.

          I’m sorry about your situation. Just ignore those people. I live in Maryland. I’m afraid to talk to people, because I’m afraid they’ll make fun of me or insult me.
          I’m not very social. Probably because I don’t want to get insulted. I must go now.
          I’ve enjoyed communicating with you. bye.

          Nicole Yellig

          • Nicole,

            I have grand mal seizures in addition to limbic seizures. Seizures are just one of many things that are wrong with me due to my Chronic Lyme Neuroborreliosis Complex. They’re nothing to be ashamed of. People, in general, don’t make fun of them because they actually know what they are, and that they are serious due to medical shows out there. They see them acted out and how doctors react. I’m 28 and in college they were taken very seriously. Do you have epilepsy, have them continuously, or are they more random? Mine are random and triggered. I’m ashamed of my dementia, so luckily I don’t leave the house often! It’ll be alright!

          • I admire you for caring enough to post your comments. You must be a very strong person. My disability is not nearly as debilitating as yours and there are days when I have to force myself to get going. You’re my shero.

  • I would love to see more education in the workplace about the invisible disabilities. Because I am articulate and successful, most people don’t know that I have ADHD, or how much harder I have to work to stay organized, get things done on time, or concentrate in a noisy environment. Since I don’t have a special parking place and seem bright, I sometimes feel as if my struggles don’t count. Yes ADHD is like driving a vehicle with a formula one engine and the steering linkages of a school bus. We need to make a long more effort to stay pointed in the right direction and wind up where we want to go. Of course we do have some interesting side trips!


      I am the mother of twins with ADHD and Mild LD that seems like
      it is getting worst. I wondered is there a Web Page started by
      anyone so everyone can help each other. For example when
      you find companies who are willing to work with different “disa
      bilities ” let us know. It would really good to talk with others to
      get help through some of the road trips that you find yourself
      on as well as find the companies who are willing to work with
      a diverse work force.

    • I have ADHD as well, but the Lyme has actually harmed my cognitive function, so dealing with ADHD in school was easy compared to dealing with brain damage. It takes a lot longer. I took Concerta and went on to be valedictorian of my graduating class. In college I was allowed as much time on tests as I needed and still took it. Without the drug I would skip homework, not care, put things off, make simple mistakes in Calculus and Physics, which made you fail the problem automatically. But I graduated with a BS in Chemistry and Microbiology, magna cum laude, 5 honor societies, completed an honors program, and barely anyone knew I had ADHD. I did better than the “normal” kids. But my IQ isn’t high (114), so they discriminated against me in high school and I wasn’t labeled academically gifted. I missed out on “smart kid” opportunities, but somehow, I did better than all of them in school. IQ tests shouldn’t be used to label someone’s intellectual abilities. I’m sorry I can’t visualize something in 3D when you show it to me in 1D. But I took 2 Calculus courses, statistics, discrete math, physics, and aced them all. I was also a prominent violinist, but my dexterity issues made me put down my violin.

  • Linda Bumpass

    Thanks for the article! I second what Lisa said and have had many interesting side trips too!:) Many years ago, I used similar wording to #4 with a colleague who had survived polio only I worded a bit differently. I had been with some female visitors who were discussing what an inspiration the man was and really raving about him. I was lost upon hearing them for about a full minute because they did not mention his pronounced limp or they polie. I was baffled at their tone of voice. His disability had become completely invisible to me such that I couldn’t immediately connect why they were speaking that way about him. I talked with him about it later. In his case, my perception of him was exactly the way he wanted to be seen — as only himself. This article raised my future awareness in that others might not feel the same though.

  • rayine rainbow

    I am also a person with ADHD/ and back problems, all of them are invisible..I am 62 years old so I was mostly raised before they had a name for what I had besides lazy, not working up to your potential, wandering, daydreaming etc..I was luckly though I had a mother who never made a big deal of it and knew for so reason I couldn’t do the same as my brothers..So, here I am years later in a job in the workforce, only able to get a part-time one..After a domestic volience and a divorce, from lack of self-esteem…That I loved..and am told by a co-worker oh! we don’t think of you as disabled all of the moment checking me and listening everything I say to people.We worked with the public…My supervisior didn’t..Now, I am someplace else and I have a supervisior that is a dream, checks things I do., quietly tells me if I’m doing something wrong..is always around for questions…and am treated very good..just as all of the other employees..Disabled or Not…

  • Cissa Bipolar

    Hi, there, I’m really glad someone started talking about invisible disabilities. It feels really lonely no to be understood by those around you when you’re bipolar. It’s something you just can’t predict, and it’s really hard to control. I feel I had much I could contribute with in the companies I worked, but, unfortunately, my sharp collocations simply fly off my lips and hurt people. It’s terrible to live working on your words constantly, before they leave your mouth. It’s tiresome and joyless. In order not to be taken wrongly and have to explain my acts and thoughts constantly, I decided to work on my own. Bipolarity is an illness not everyone understands, and it really annoys me when I hear jokes including words that reach some of these invisible disabilities. So, othe things people should stop saying are: She’s so bipolar…/ This computer is esquizophrenic today…/ Hey, “mongol”…

    Tks for the opportunity to unburden,

  • I’d much rather someone ask me “whats wrong/what happened? ” than stare at me forever, wondering.

  • Susan Hirshorn

    Bravo. As a left leg amputee (who uses crutches) for over 30 years I’ve heard all of the above and more. I think you should try to get Google or Yahoo news to run this piece since the ignorance level is still pretty high. (Yahoo News just ran a piece on what not to say to new mothers so they might be open to it). Keep up the good work!

  • Cassie Jayne Phillips

    I think some people can be very tactless and insensitive when approaching people with disabilities. Someone I know has this rather ignorant opinion of people with mental health problems she call them nutters and other not very caring names. She says most them it is all their own fault and they should pull themselves out of it. I have suffered depression myself and I can relate to what other people who have similar problems. I have now distanced myself from her I don’t like bigots and she should be more caring in this area. Anyone can suffer depression lets hope she never gets it. It is a terrible illness I had it for 4 years it was a uphill struggle to get back to being well again.

  • Carole Heath

    I agree with Cassie’s comment and many of the other comments on this site. Some people I stress that some people because not all people have this attitude towards people with health problems. I think that people who have a insensitive approach are either bigots or ignorant. I had a friend who was very nasty at a swimming pool which I go to at a sports centre near me. She became very annoyed because some disabled people where swimming with an instructor near where we were swimming she told the instructor that he should take the people to the other end of the pool as they were getting in our way. I told her she should have more empathy and respect others she didn’t really like me saying anything but I felt she needed to be told. Since then she has been more sensitive in that particular area.

  • Donnie Meredith

    I would like to start off by saying thank you both to the author, and for the authors of the comments for physically and metaphorically standing up for those of us on “the other side.” I have a friend I met after my accident who is starting an amusement park for people that do things differently than the so called “able bodied” people called “The Other Side Fun Park” in Bowling Green Kentucky. I had a car wreck at age 19 and due to an infection I had to have a hemipelvectomy, lost my left leg from the hip socket down. I have, like many others heard the worst and the unintentionally hurtful with good intentions. I’ve figured out some things that bother me personally. I generally try to laugh them off, but I’m like the clown hiding the tears with his make up. I also suffer from severe P.T.S.D. (Post Traumatic Stress Disorder) so I understand the invisible issue as well. One thing that scares me is “don’t worry we will get you in somehow.” My wheelchair has been dropped more than once and since I am 6’5″ tall and 250 pounds, it can be painful. One that was said at church one time was “bless his heart, he is just a crippled” that one hurt bad. But probably the number one thing that bothers me the most is my wheelchair being used as a leaning post or a footstool. My family is the worst about that. Part of my P.T.S.D. involves, I can’t handle being touched and rubbed on by people and so when people use part of me (my chair, or my body) to lean on it makes me feel like I am just a piece of furniture. No matter how many times I talk about it, they just don’t understand. They love me and are very supportive it’s just another one of those things that as my wonderful girlfriend says makes me unique.

  • Didn’t move in my mother’s womb; feet put in braces an hour after birth; epileptic seizures, another birth defect corrected at three. Shy, self conscious, every bully in the universe smells your fear. I am 57, on the austism spectrum, and after getting cancer, a judge deemed me disabled.
    I work every day to count my blessings, but I believe this world needs a wake up call when it comes to bullying and mistreating the disabled. Be kind, and show love to those that are different.

  • As a teenage girl with cerebral palsy I will say that many other disabled (I’m really sorry if that’s not pc, I didn’t even realize handicapped wasn’t) really do need to grow a thicker skin. I don’t often notice the things on this list anymore, years of living with it have conditioned me to it. If we want people to treat us like normal people, we need to stop taking offense at the small things in life; and we need to show able-bodied people that we are people. I’m not saying you should answer awkward or invasive questions like #5, but you really should feel flattered that people want to learn about you. Just by virtue of being unique, people are going to ask about you. at least they are asking rather than sitting there staring like an idiot

    • Luke Visconti

      I’m recently disabled. I agree with you for the most part. Only two things bother me: cruelty and ill intent. Many of the things listed could be said innocently, but unless you’re a child, you have to factor some amount of cruelty to someone asking personal questions or making assumptions publicly. Luke Visconti, CEO, DiversityInc

      • Is there a limit to how much you can write? I wrote a long message and it wouldn’t post. I don’t think I can get it back either…

  • I was born with both Cushings and Hirschprung’s. Believe me, I cannot believe the cruelty of the so -called human race. The Cushings caught up to me as and adult and put so much weight on me almost overnight. Cruel comments such as “boy, you really let your looks go” to one doctor telling me I am fat and have body hair because I am an Italian. With the HIrschprungs, which the child and/or adult cannot have a bowel movement and will go for a long time w/o a bowel movement. I always hear eat more fruit and vegetables. How about this, look in my refrigerator and you will see it full with fruits and veggies. I have learning disabilities as a result of these diseases Both diseases are painful. I lost a lot of muscle tone with the CUshings and in extreme pain with the Hirschprungs. The thing that hurts the most is hearing that. I fake the pain or why did I ask God for these diseases. First, you can not make up these diseases and I never asked God for these diseases. Before people open their mouths, maybe they can educate themselves by Googling these disease.

      • A friend once told me, she avoided people with disabilities, and said to herself and others, that they must be faking, because to acknowledge the truth, would make her realize that it could happen to her. I told her she was right. Wouldn’t it be great if we could treat each other as equals regardless of our differences?

  • Good morning, I am glad I saw this site on line. I have a disability that came on quickly and have only had for 9 months. The onset was extreme and still challenging everyday. I have had some strange comments and responses from family that my own mother said ‘you are going to be fine’. And when I have told her symptoms she says we all have those symptoms. lol hello? I was like thrown in defense mode, my mother of course. And I went over to some friends house, and is really major for me to go anywhere. One of my friends said, “You look just normal.” Both were looking at me smiling. I didn’t really know how to respond to that. I let them know that I take care of myself the best I can. My walking ability is like a roller coaster, some days better than others and the better days people are saying, “Oh you are getting better.” How can you get better from this and is medically impossible. I know they are coping and responding in the way they feel is okay and I don’t believe any one is personally trying to saying something that is unkind. Until I have actually had disabilities myself I wouldn’t have been this aware of the impact of what is said.

    • I vouch for your observations. My favorite people are those who see me struggling to walk – and like moths drawn to the flame – purposely get in my way. Even worse are the animals that edge me out of the way to get in front of me.

    • You sound exactly like a person with Lyme Disease. Same thing happens to us and it irks me so much!

  • Ann Confidential

    Hi everyone
    im new to this site and why does family say cruel things?
    Im trying so hard to be independemt as much as possible with being progressively blind and hearing Impaired at birth. Ive learned how to use the white cane very well and use public transportation.
    I dont ask for anything from my siblimgs knowing it is a hardship for them due to work, family etc.
    So when we all got together i was excluded in doing just about anything.
    i questioned why and was told “i always want to Prove something , im stubborn and a burden”
    just recently a sibling had a massive stroke and of course my other sibling doesnt offer to ask if I would want to go visit (out of state).
    I was told im not independent and I need to face reality! Which is a joke !
    In tears

  • Hi, my name is Kevin, I’m a twenty four year old male with cerebral palsy. Over the many years, I’ve always tried to surpass my disability, because I was told all too often; to be an inspiration, that I’m tough for living with my condition; that eventually I’ll get better. I don’t think anyone really understood what they were saying to me, now I’m old enough to know better. I know I can’t outrun CP, I can barely walk up stairs, for the longest time I thought I was supposed to be something great; this inhuman individual capable of anything regardless of what they were going through.

    The reality of this hurt my spirit, but thinking back, I realized that no one really understood my disability. I got tired of the “You can be fixed” or “You can do anything” and “You’re just being lazy”, this isn’t something that you can pray away, or some mind over matter junk; and when my family says stuff like that -best of intentions I’m sure- I don’t feel like they really know what’s going on with me. I’m not tough for living as best I can with the disability I have; I’m actually a wreck struggling with both depression and CP.

    People often seem to think that because I’m smart, and I look normal, my disabilities doesn’t exist; and that only makes it harder to tell people what’s going on with me and have them understand it. There’s a lot that I can’t do physically that I try to do, and when I can’t, I get called lazy. I would love for people to realize that there are days when I feel terrible and can’t get out of bed. I’m smart, but my disability isn’t going anywhere, and as I realized that I tried to get my family and friends to understand that; but I don’t know what to say.

    I guess I want people to stop putting me on a pedestal for living, I’m not brave, I’m not a hero; I haven’t done anything worth being a inspiration. I’m a college drop out still trying to figure everything out, and while I’m far from a failure; my disability doesn’t make me great. When people say it like that, I feel like they’re saying my life must be terrible, like I’m broken or something lesser; it feels condescending. I’m human, don’t give me a medal for living life with what I’m given like I just cured cancer. Thank you for the article and thank you for reading.

    • Kevin, You are right, many people don’t know what to say to those with disabilities. Really many people don’t know what to say to people who differ from themselves. I do think most intentions are good, and articles like, “What not to say” are helpful. You said you don’t think your family knows what is going on with you. You said it well with this note, why not show it to them? And believe me when I say, very few 24 year olds know what they want to do with their lives, I certainly didn’t. I hope you talk to someone about your depression, an understanding ear can make a big difference. Good Luck in all you do!

    • The pedestal. I hate it. Since I did such “extraordinary” things while being sick with this life threatening disease, my mom brags on me. She tells everyone in her women’s groups about my status, what’s going on, how I feel. Then she comes back with “so and so said they’re praying for you” or “God wouldn’t give you something you couldn’t handle”. I’m a Christian, but I hate it. I hate the “how are you feeling?”. I don’t want to be an inspiration anymore. I did a lot of helping a few years ago, then I just got burned out. The same stuff over and over, “what does this mean? Can you interpret my test results? What supplements should I be on…etc ” I was a doctor for this women’s Lyme Facebook group. I lay in bed all day and I’ve come to realize it just exhausted me and didnt energize me. So I stopped. I have a couple really good friends from the group who see my doctor, but other than that, I just had to stop trying to fight the man. The government, CDC, NIH, MAYO, IDSA…I knew I had to leave that to those with the energy and spunk. I had it in high school. I was voted “most involved” and was captain of every team and was still valedictorian. But that was pre-Lyme energy.

      My parents are $250,000 in debt from my drugs, treatments (I have a port in my chest and have been on IV and/or oral antibiotics since 2007). I did hyperbaric oxygen, infrared sauna, massages, chiropractic, acupuncture, IV glutathione and Myers cocktails. I take shot glasses full of supplements, concentrated xylitol to unclog my jugular artery of biofilm, detoxing kefir based recipes, and more. The vast majority of Lyme patients can’t afford this stuff, so they suffer. I’m lucky to have all the pain meds I do. I’m lucky I have the caring parents I do. My husband and the rest of my family.

      The dark side. There always is one. I would cut myself to concentrate my pain receptors on the cut instead of the rest of my body. This disease isn’t treated compassionately. It’s like an elephant being swept under a rug. Up to a million people contract the disease each year, 75% don’t have the rash, even if they do and get tested there’s over 60% false negatives, and the short course of antibiotics isn’t effective. There’s one reliable lab, but most regular doctors refuse to use it. Every. Single. Country. has Lyme. Different species of Borrelia, but it’s all there. The ticks can be as small as a pinhead.

      The one thing I refuse to give up on is educating people. But not on a pedestal, and I don’t want a gold medal, or another front page article in the paper.

      • I have Chronic Lyme Neuroborreliosis Complex with MSIDS (Multiple Systemic Infectious Disease Syndrome). I was bitten by a tick that I didn’t see when I was 17 and never got a rash. I contracted Borrelia burgdorferi, bartonella, babesia, mycoplasma, EBV, many herpes viruses, and foot and mouth disease. I am 28, so I’ve been sick for 11 years. I went to college and lived at home, but slowly I started developing symptoms, I’ll list what I can for you: grand mal and limbic seizures, central and peripheral system damage, cognitive distinction that led to a dementia like state, hand dexterity loss (I had to put down my violin and I can’t really write well), hand tremors, adrenal fatigue, vision loss, homeostatic irregularity, delayed reflexes and under/over reaction, dysphagia, biofilm in my jugular vein, poor circulation, eczema like rashes, excruciating neck, thoracic and lumbar spine pain, askynesia, RLS, insomnia/hypersomnia, musculoskeletal problems, bursitis, photophobic migraines, TMJ, autistic tendencies, depression, severe anxiety, Lyme rage, urological problems, PCOS (I was bleeding so heavy for 6 months straight I was wearing diapers), severe leg weakness (I couldn’t count on my left leg to save my life, my knee would give out), sensitivity to fluorescent lights, high pulse, below normal body temperature (97.3), and my pain level is at an 8 most days. I have PTSD from being abused at our hospital. I was put in restraints while seizing and during a Lyme rage episode. My parents were kicked out and they verbally threatened me. That’s what I can remember off the top of my head…

      • Sorry everything is kind of backwards, but I had to split up my comment because it was too long and it ended up like this. Let me say I have a BS in Chemistry and Microbiology, graduated magna cum laude, belonged to 5 honor societies, and completed a 5 semester honors reading program. My doctor took me out of college for a year and a half of 24/7 observation because I am prone to falling, hitting my head and then seizing. So now, I’m in bed all day and get up in the evening when my husband comes home. We’re both scientists (he has a PhD in organic chemistry), so we talk straight medicine with my doctor. That’s how I was able to help individuals in the Facebook women’s Lyme group I was in. Hope you can understand this jumbled mess of entries!!!

  • I think this article should also include etiquette for people with special needs. Being disabled doesn’t mean your manners are.

  • As a physically unique individual I have to say that in my opinion, it isn’t so much in what you say, (anyone who mistreats another isn’t worth a second thought), it’s more in what you DON’T say (if you want to say something just say it, give me the opportunity to know what you think about me) the silent treatment is no different than BSing someone, it really isn’t. I get it, most people don’t want to seem or say something disrespectful and that’s great but really that can do more harm than good especially in the long run, say what’s on your mind. To others with challenges first and foremost accept and love yourself for who you are, you’re an INDIVIDUAL and there is no one else like you YOU’RE AWESOME. If you do that you will carry the confidence to shrug off and dismiss the few who are no doubt going to judge and be ignorant, but best of all more times than not, you will enable other people (who generally mean no harm) to take a positive interest in you. This is also very much applicable and beneficial in a dating scenario. Really people stop wasting energy and time worrying about others judging you, it’s as natural as night and day people are going to judge and assume it’s just what we ALL do as humans. Focus on you and finding positives in life because they are always there no matter how many negatives you see, all you have to do is try.

  • Hi all nice to read all ur views on disability..im also a disabled person who faces such challenges and staying in India is even worse coz 90% of them look at you in sympathy rather than our strengths

  • I have a few stories about my husband, who is in a wheelchair and was born with JRA. He also has myotonic dystrophy and is a recent right-sided above-the-knee amputee.

    1. People ask him all the time how he ended up in the wheelchair. He usually obliges. Half the town knows who is he is now, and we are relatively new here.

    2. He’s been told that he is the way is he because of his sin. Umm, he was born with what he has, so…

    3. His mother took him to the mall and as he was reading some of the t-shirts, some woman approached and, amazed, said “Oh, so he can read?”

    4. Not really a story, but I sometimes forget that he is disabled and I put things out of his reach, or ask him to do something he physically can’t.

    5. One day at the grocery store, a woman approached him and asked how he went to the bathroom. He replied, “like this,” pulled out his penis, and urinated on the floor in front of her. He was sick of people asking him. He was banned from the store for a while. That, and how he has sex. Thankfully, he never demonstrated the answer to that question.

    6/7. He is a drummer, a counselor, and a minister. He struggles and suffers in pain every single day to do what he loves, but he wouldn’t have it any other way.

    P.S. The grocery store incident happened before he became a minister :D

  • Here’s another suggestion: stop constantly urging a family member who is pushing her parent’s wheelchair to accept your help because she is petite (or whatever it is thats causing u to think we’re incapable of exiting an automatic, side-loading handicapped van and wheeling our loved one into a building).

    Its fine (and very nice of you) if u want to hold a door open to the building, like in rainy or snowy weather for example. But it’s rude to try and take over or repeatedly insist on helping with something when we’ve already indicated to u “no thanks, we’re good”.

    And btw, pushing someone’s wheelchair when his feet are down is not helpful, its dangerous. Please leave us be in peace. We family members usually know what we’re doing. Just because YOU may think that at 5’2″ we’re too small for the job doesn’t mean we’re less capable than u. Please accept and respect that.

  • Tia Williams

    I have been handicapped since day one, but have overcome a lot. I don’t these people whom I have known all of my life still insinuating that my competence is in question. I like that came a long what. Thanks to it, I have something wrote on Facebook every week. I know a drop-dead gorgeous born blind whose birthday is the same as Billy Dee Williams. April 6.

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